National ME Observatory: Where’s the website?

AfME National ME Observatory: Where’s the website?


[The following has been posted on Action for M.E’s forum, this morning.]

Yesterday (2 April), Norfolk newspaper edp24 published on its website a piece on today’s Observatory Workshop in Norwich at which:


“Patients, health professionals and others interested in the conditions […] will hear about the [National ME Observatory] findings so far and asked for their ideas about how the findings can be of most use to patients.”

2 April marks the start of Year 3 of the Observatory Project – the final year for which Big Lottery funding is being provided. It had been agreed with the BLF that certain tasks would be completed within certain years of the Project’s life.

*According to Page 6 of the BLF’s Grant Offer, dated 20 March 2006:

Agreed year 1 Tasks for Action for M.E. were:

  • Initiation of National ME Observatory collaboration, including media announcements in lay and professional media, and establishing communication links with the CFS/ME community.
  • Website will contain some information on support for social inclusion of people living with CFS/ME and their families in England.

Agreed year 2 Tasks for Action for M.E. were:

  • Expansion of web-based communication facilities for Observatory, in order to improve facilities for dissemination of the results of the project, and preparation of strategy for succession funding.
  • Workshops involving people benefiting from research.

Agreed year 3 Tasks for Action for M.E. were:

  • Dissemination of results through workshops reporting back to people with CFS/ME, conferences, publications, the media and web-based facilities, and submission of research proposals for further funding.

*In Table 10, Page 46, of Action for M.E.’s funding application document Establishing A Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME) OBSERVATORY FOR SOCIALLY-INCLUSIVE EPIDEMIOLOGICAL AND SOCIAL RESEARCH INTO CFS/ME submitted to the Big Lottery Fund in 2005, a figure of £2000 was projected for “The internet-website for CFS/ME Observatory” for the dissemination of information to a target audience of “lay public, CFS/ME community, Professional, carers, Stakeholders”.

But no dedicated web facility for the dissemination of information about the Observatory Project was launched during Years 1 and 2 and the Project has now entered Year 3.

Action for M.E. has failed to set out lines of accountability for those responsible for the management of the Observatory Project and for the oversight of the spending of £500,000 of public money and make these available to its membership and to the wider public, either via a dedicated website, via web pages on its own website or through any other means; there is virtually no information available online around the work of the Observatory, including the names of those who sit on the Observatory Steering and Management Groups.

No channel of communication exists between the Project’s management and the public. No information is available online about the progress of the various epidemiological research studies being undertaken. Therefore, the operation of the Observatory Project, those responsible for it and the progress of the research studies being undertaken through it cannot be monitored by the public because this information is not available for public scrutiny.

With the Project entering Year 3, what is the reason for Action for M.E.’s failure to set up a website for the dissemination of information about the Observatory in accordance with Tasks agreed with its funding body, the BLF, in 2006?

*Information provided under Freedom of Information Act

Suzy Chapman

03 April 2009